BugZilla...

The day started with the housekeeping lady from the hotel we are staying in after Braden's bone marrow transplant telling me that she always requests to clean our room. She said she told her boss, that lady is SO clean!

I smiled with pride.

Yay me.

I do attack every surface daily with Chlorox wipes, it's important to keep things germ free because of Braden's extremely compromised immune system.

Then I got a call from a friend in the Philly area asking me if Braden would like to do a painting that could help raise funds for children with cancer.  I said we would love it and we set it up for the supplies to be delivered at 10:30 the next morning.

We've gotten into a really bad sleep pattern while in Philly for 2 months so I knew I would need to have both of us shower the night before so we would have a head start the next morning. It takes about 2 hours to get Braden going with his meds, fluids, and calorie intake.

Braden was busy with an App on his I-Pad so I decided to shower first. That is a break from our usual routine.

I warmed the water and got into the shower, shut the shower curtain and noticed a HUGE brown spot on the curtain out of the corner of my eye.

I focused my eyes on it and noticed it was moving...it's antennae...

and it was staring at me.

I think it actually said, "Boo!"

I'm a country girl. I grew up where we had rattlesnakes outside our door, under our cars, around the foundation of our house, in our barn...everywhere and as result I know that when you see a venomous enemy, you freeze and slowly back away.

You do not scream.

But I do NOT like bugs...had it been a rattlesnake, I would have been more composed.

I didn't scream, but I did inch the shower curtain back slowly...it started to move so I quickly just jumped through the small opening, over the toilet that was blocking my way...

and ran for my life to the other room.

I didn't even hesitate, I called the front desk of the hotel and explained there was a cockroach in my shower that was roughly the size of my entire hand and I was too chicken to kill it. I needed help...a brave soul who could kill it for me. The thought of the crunch that was going to happen when it was killed made me ill.

Seamus was working at the front desk and was the lucky man to answer my phone call. We've been here several weeks so I know everyone, and they know us. Seamus tried not to laugh and said he would get help "right away".

I explained to Seamus that it was roughly the size of my head and that it would be great if they could hurry.

Audible giggle...thanks Seamus.

I knew when they got to our room and saw it, they would agree that it was about 3 foot tall and would likely call animal control to retrieve it.

They wouldn't be giggling then.

I waited....

...and waited...

...and waited.

Finally, a knock at the door.

It was a HUGE man...seriously big, big dude.

I figured this would be a fair fight now...he and BugZilla would be eye to eye and my money was on the brave big dude.

I couldn't even go back in the bathroom so I stood in the doorway and pointed to which side of the shower curtain BugZilla had taken up residence.

He wasn't afraid (pssshhhhh) and went in the bathroom...

and I did the "ew ew ew ew" dance out of his way and against the hallway wall.

I wanted to be supportive...

and I wanted to be as far away as possible.

The Big Dude smacked the shower curtain hard and I could see BugZilla leap with the agility of SpiderMan to the opposite side of the shower wall.

The Big Dude got his first glimpse of BugZilla and JUMPED back and threw his hands up.

I resisted the urge to say, "I told you he was HUGE!"...

...barely.  It was SO right on the tip of my tongue.

He turned around and looked at me with wide eyes and said, "I will be right back, I need to get something."

Aha...see...even you, Mr. Big Dude, have to get something to kill it with because it's 5 foot tall and has muscles like the Incredible Hulk.

 See, I'm NOT such a wimp.

I said, "So you are going to piss him off and then leave me alone with him?"

He smiled and we both giggled.

But I wasn't kidding...

I was worried.

So I waited for him to come back with bug killing tools.

And waited...

....and waited...

....and waited.

Just as I was sure I was going to need to call down again and have them evacuate the hotel, I finally heard a knocked at the door.

I told him he didn't need to EVER knock to get back in....just come on in...

And I warned him that I was pretty sure BugZilla was planning his attack...

and that I feared for his life.

I've watched movies...

I know how it works. You see an intruder,  leave to get a knife and boom....the enemy has readied an AK-47.

But Mr. Big Dude was smart and had brought bug killer tools...

...two small boxes.

Seriously?

I said, "so your plan is to capture and relocate him?"

He laughed,

but my fear for his life was genuine.

This was a bad idea. This wasn't enough of an arsenal to take on BugZilla.

I told him my hairspray was right beside the sink if he wanted to stun him before he launched his assault.

That idea had been suggested by a wise friend on Facebook when I posted a picture of BugZilla...

(I was afraid we wouldn't survive and I wanted my friends to know what had killed us)

Mr. Big Dude walked into the bathroom but he wasn't so bold this time. He was VERY cautious...but clearly he was a Big Dude and couldn't appear to be scared out of his damn mind while protecting a mother and child from an armed 6 foot tall cockroach with wings, antennae to use like swords, and with legs hairier than mine after 2 days without shaving.

(that's pretty hairy)

I moved to the wall and assumed my supportive, yet defensive position. The door was right next to me and I could make a break for it.

Braden was still watching his movie and although I love him with every fiber of my being...if BugZilla came after us, he was on his own.

He's 9...maybe BugZilla wouldn't even notice him given that he was three times Braden's size. Perhaps, he would be viewed as a mere crumb compared to hefty momma and Mr. Big Dude.

At least that's what I hoped.

Mr. Big Dude began trying to kill BugZilla by swinging his boxes...but BugZilla countered with a direct attack and lunged after him.

Mr. Big Dude jumped back, but to his credit he got right back in there and continued fighting the good fight.

I was laughing so hard I was crying...but I was being encouraging saying, "Don't give up...you can do it...we have to kill it because it is going to get US if you don't!"

He was laughing too...but he was scared and jumping around like a little girl. Even though that was 1,000 times braver than I was at that moment.

He said, "You have a fighter here for sure!"

As his position was pushed backed further toward the bathroom door, I left my defensive/supportive position and moved to the other room...it was getting too close to my space for comfort.

I finally heard a flush.

I walked back to my hallway stand and said, "Are you sure it was dead? If you flushed it and it comes out of that toilet, I am going to lose my damn mind!"

He laughed and said that it would be on him if it did.

I looked directly in his eyes and in a very slow voice said,

"If it comes back out of the toilet, I will hunt you down and kick your ass!"

We laughed.

But I was not kidding.

He called housekeeping...the shower was cleaned and the bathmat replaced because he had apparently squished it on the bathmat.

I posted that it was dead and about the squishing and my "helpful" friends told me you never squish a cockroach because they have thousands of eggs in their stomachs and the eggs spread from the shoe across the floor and then the eggs hatch everywhere.

Other helpful friends told me to be sure to watch carefully because BugZilla may have brought friends with him to the party.

Yea...That'll help me sleep.

Not.

I posted that I had tipped Mr. Big Dude $5 for rescuing me and one of my friends responded with a congratulatory remark....

She noted that I had now officially ordered my first contract hit.

That one made me laugh out loud.

And it makes me the "BugFather....

wait "BugMother...of Philadelphia".

Back off bugs....

I'm out of five dollar bills but I have a whole roll of quarters for the laundry machines.

I will order more hits should any of you wise guys get any ideas.

Let it go...

Braden and I have been 1,000 miles from home for about two months now while he goes through his bone marrow transplant.

When we left, it was still a gray, dull, and bitterly cold winter. Now it's a colorful, warm, and beautiful spring!

Our days consist of long walks that last about 2 hours each day (when it's not rainy or cold) in which we have found many little parks, watched spring flowers bloom, collected rocks, watched water fountains, chased white butterflies, talked to pigeons, watched robins pecking worms out of the dirt, talked to the police officers, played basketball in our room, spoken with each new neighbor from our room window as they stood on their balcony below us, chasing down garbage trucks, firetrucks, and ambulances...and various other awesome things.

You know...the important stuff!

I have largely unplugged from the WIFI and cell phone world.

I thought giving that up would be like losing a limb...

and it sort of was. :)

But Braden needs me right now and I have one job to do...to get him well....

...and get us HOME with the people we love!

And "getting him well" doesn't just mean making sure he gets his meds, electrolytes, 2,000 calories, and 1,700 ml of fluids each and every day...it means keeping him happy and active while we are in isolation and he can't be around people.

It's hard to be 1,000 miles away from Brian, Zach, and my friends.

FaceTime is great, but Hugs are much better!

I have wine :) but....

Braden just has me.

So, I have to take my job seriously,

and not so seriously.

We take detours every single day.  We learned to take detours long ago... http://deliecehofen.blogspot.com/2013_01_07_archive.html

But somehow...this time so far away from home and just with Braden is different than simply taking detours.

I've been granted a rare opportunity to unplug from the hustle and bustle...

I'm not a minion to my phone and WIFI.

I am grateful for that technological world because it allows me to keep in contact with my friends and that ROCKS!

And sure....I do that from home as well, but this "time" is different.

At home, there is the constant rush of everyday life. Each day I have my checklist of things that must get done and tasks I need to finish.

I don't have that right now. My friends are taking care of things at home for me. How blessed am I?!

It did take me a few days to chill out, stop micromanaging, and just "let it go".

(I'm an admitted control freak...at least I admit that and own that) :)

What a wondrous gift this "down time" has been. It has allowed me to be on butterfly patrol, climb rocks, giggle, play, and enjoy time with Braden without feeling the constant need to hurry it up so I can "get things done".

What I'm realizing is that even though we take time to detour, we NEVER get time that has no pressure of the "to do" list and the hustle and bustle...

the constant "gotta do"....

...we don't get to ever let it go.

(and there is no cute snowman implied in that phrase).

I don't suppose it will ever be like the days of Beaver Cleaver and Aunt Bee from the Andy Griffith Show with hats, dresses, and chats over tea being the event of the day.  I'm certain June had a lot of things on her "to do list" with the cleaning and cooking and ironing...

but things used to be different.

I've only had my iPhone for about 3 years, I fervently waited because I didn't want to be accessible 24/7. I know myself too well and I can easily get consumed by that accessibility...

and others being accessible to me.

I planned for that consumption so I always have my phone ringer shut off. I don't have any notifications set for my phone. The only way I know if someone has called, texted, messaged, emailed, Facebooked, or Tweeted is if I pick my phone up and check.

BUT...I feel this obligation to be accessible. I have this need to check continually in the event someone needs something right away.

I didn't used to be that way...growing up I was only accessible during passing periods in the school hallways and occasionally on the weekends via our phone which was in the kitchen where my mom could hear everything I was saying.

There was no phone in my room,

and no TV in my room either, just the one in the living room with two channels that the rabbit ears on the console TV could pick up.

GASP!

And while I used to moan and groan about all of that (constantly), I now yearn for that "unplugged" time to just be quiet and not have to worry about what has happened and who I didn't get back to while I was unplugged.

And being stressed about how I need to stop being unplugged because things are building up as I'm quiet,

and then worrying about how miserable it's going to be to catch up once I plug back in...

Can I get an AMEN??

When I was working and was at a meeting all day, I used to then spend hours after work catching up on my emails so others would get the answers they needed right away.

We are simply too "accessible"...

ALL the time!

We don't have down time, we simply can't "let it go" anymore. There's an unspoken expectation that we will answer that work email within a few minutes and if we don't, people are upset or disappointed.

That's really not a very healthy way to live but we are consumed by this constant accessibility, we have simply given in to that way of life...it's now the norm.

I am very guilty of perpetuating this new norm. I have a huge need to be responsive, reliable, and accessible,

but this time in Philly has allowed me to let it go.

And THAT is a pretty big gift.

I'm lonely...I miss my 11 year old, husband, kitty, and my friends VERY much but...

there's never going to be another time like this that the biggest "to do" on the list for the day is collect rocks and watch the construction of a new building with my bald 9 year old.

I need to figure out how to "let it go" once we get home...

maybe I can schedule a "let it go" appointment in my electronic planner,

ask SIRI to create a reminder an hour before,

and set my meeting reminder for 5 minutes before it's time to relax.

Since I don't want to turn my notifications on, maybe I'll just stick with the wine thing.

Whatever it takes, I think we ALL need to find a way to let it go more often!

The Cheetah, The Elephant, and Prom...

Last night I couldn't sleep...worried about the results of the bone marrow test that will show if Braden's cancer is gone after his transplant. If it's not, we are in big trouble...so it's one of those things that will keep you up late at night.

I was watching the Animal Planet (seriously) and a show about African Cats came on, it was narrated by Samuel Jackson.

(every time I hear his voice is snicker because all I can think of is him narrating the book "Go The "F" To Sleep"...)  Giggling now...

The baby cubs of the lionesses and the momma cheetah were SO adorable. I just wanted to snuggle them (perhaps not the best idea but they were just so huggable)  :)

The cheetah cubs are playing in the tall grass when two male cheetah brothers approached. Samuel warned us that male cheetahs often will kill small cubs.  I wanted to turn it off, but I kept watching...hoping they would be okay.

The momma defended her babies but they got around her and started attacking her babies.

I was literally standing in front of the television, pointing my finger and telling the male cheetahs to stop it right now...and telling the babies to run..hide...and where was momma??

It looked like it was over for the babies when a HUGE momma elephant came stomping in, swinging her trunk and bellowing at the brother cheetahs to scare them away.

Now I was clapping, crying, and yelling, "Oh you GO Momma Elephant!! Kick their asses!"

After the cheetahs ran for their lives, the elephant just walked away and the babies were safe and sound...and so was the momma.

Whew...

I started thinking about how we should all be more like the momma elephant...willing to step in and help someone other than our family and friends just because they needed our assistance.

Then I remembered the Prom party that was going on when we checked into a hotel the day Braden was dismissed from the hospital's bone marrow transplant unit.  Brian was bringing the luggage into the room and he laughed and said there was a HUGE prom party in the room next to us, so it might be a long night.

We had heard them...I just didn't know it was high school kids and a prom party.

By about 8:30, it was in full swing and crazy loud. Grandpa Zach (our 11 year old) was quite perturbed and wanted to go next door and tell them to be more respectful and be quiet so people could "think".

I laughed and wished I could record it and play it for him in about 6 years for his reflection purposes. :)

They weren't bad, just loud and silly and then about 10:00, they all disappeared. Apparently, going to the actual prom itself.

I braced myself for their return and the "After Prom" party that was likely coming later that night until the wee hours of the morning.

About midnight, I heard two loud voices in the hallway and thought, "here we go..."

The boy was yelling, "Why the "F" are you crying!! QUIT crying" and the girl was sobbing yelling that he had ruined her prom night. After a long argument in the hallway, they went into the room and continued the yelling there.

Ah...young love (bats eyelashes)

I was bracing the the rest of the gang to join them and trying to go to sleep but then the girl yelled, "Why did you hit me so hard?"

That got my attention.

I began listening fairly intently (although I didn't need to try to hear them because every word they were saying was crystal clear and extremely loud). It was a 50-50 yell fest but the boy was very ugly and demeaning in how he was treating the girl. And she was crying profusely in between her verbal assaults, but she was dishing out as well. That went on for at least 30-45 minutes and I just kept listening thinking if I heard him lay hand on her or if she sounded like she was being hurt, I was going over.

They continued and at one point I heard her say "You ruined my sex life!" to which he replied "I ruined YOUR sex life?"

I shuddered and thought...

 "T.....M.....I.....Please stop!!!!"

Then I heard her say, "ouch!"

That's all it took. I sprang out of bed and told Brian was was going next door because I was worried the guy was hitting his girlfriend and I was out the door before Brian could even get out of bed.

All I could think was that if this was MY daughter, what would I want someone to do.

And part of me wanted to get her parents on the phone so I could yell at them and ask them what the hell they were thinking renting a room for the kids to have a pre-prom party in and for her and her boyfriend to spend the night.   Maybe Zach gets that whole "disapproving grandpa attitude from someone...gulp!"

I knocked (loudly) on the door. It immediately went silent inside their room. Then footsteps...bumping into the door...whispers of "it's some lady in pajamas"...and finally the door opened.

The teeny tiny teenage girl stood there in her teenier tinier dress with dried mascara that had run down her cheeks. She said, "yes?"

She looked fine..no red marks on her (and trust me, I could see most of her skin), her hair wasn't messed up and other than the mascara mess she looked fine, and that bold girl who had been screaming at her boyfriend instantly became a little girl who was scared she was in trouble.

The dude was no where to be seen but I knew he was there, hiding so I wouldn't know he was there. Apparently he has not been paying attention in school and he didn't know that sound (especially YELLING) travels. LOL!

I asked her if she was okay and she looked at me with eyes that said, "why in the world would you ask THAT" and said of course she was. I was relieved, but I wanted the dude to know that I knew exactly what was going on in the event he decided to do anything after I left.

I realized the guy wasn't going to come to the door (chicken) so I very loudly said, "I can hear EVERYTHING! I heard you asking him why he hit you so hard, I heard you say ouch. I hear him yelling at you, calling you horrible names (I told her exactly what he had called her), and both of you throwing the f-bomb at each other every other word.  And I came over because I wanted to make sure you were okay and not being hurt."

She assured me that she was fine and not hurt and apologized profusely for being so loud.  I said I wanted to see the dude and she just froze in the doorway. It was obvious he wasn't coming into the light (because again he was NOT there...duh me) so I said, "You need to cool it buddy! You need to stop now because I will come back!"

Total silence.

She apologized again and I walked back to our room. Things were much quieter but I could still hear the "talking" and I stayed up until VERY early in the morning to make sure that she was okay.

The next day, I was mad at myself for not doing more. I had been like Ms. Elephant. I simply had broken up the fight.

I had not changed the world. I had not educated anyone, I had not helped them resolve whatever they were fighting about, I had not taught them a single thing, I hadn't told the girl to stay the hell away from that guy because he was a jerk and she should NEVER allow anyone to treat her like that...I had merely broken up the argument for that night and made it known that "mom" was listening and would be back if they did it again.

Just like I do with my own sons when they argue over whose turn it is on the PlayStation.

I was disappointed with myself for not doing more.

But...I did a little.

Just like Ms. Elephant...I did something to change the path the rest of the evening was heading down.

What a different world it would be if we all did a little.  If we didn't just walk past things and we stepped up to offer a hand to someone who was hurting. I didn't do anything huge and awesome...but I was able to settle with my conscience because I had done something.

I'm blessed to be surrounded by people who do something all the time. Friends who just step up to help because it's the right thing to do. And I realized that this is bey design. I found that "post 40", I have chosen to surround myself with those types of people and let the others who are not like Momma Elephant go in their own direction, without me.

I'm fortunate to be a part of an entire herd of "Ms. Elephants".

Be like Ms. Elephant and live among a herd of them.

I promise your life will be blessed as a result!

And I have now added "snuggle a baby tiger or cheetah" to my bucket list.

Hate...

Hate is the only four letter word I refuse to use.

Ever.

Others flow, far to freely, on too many occasions.

So why draw the line at the word hate?  What's so bad about that particular word?

Today, Braden had a surgical procedure to remove his Hickman central line...it is a line that ran through his veins to deliver his chemotherapy and then drugs to counteract the damage that the chemo did to his body.

It is a rather medieval looking device with long tubes sticking out of his chest that have caps on them to connect to the tubes from the drugs so they can be pumped through his body.

It's nice that it's gone..it means he is getting better and no longer needs it. We may actually break out of the bone marrow transplant unit at the end of the week,

a full month earlier than they predicted his earliest dismissal day from the hospital would happen.

TAKE THAT cANCER!

They also did a bone marrow aspirate to check his bone marrow for any signs of remaining MDS cells, that's the pre-leukemia Braden has that was caused by the treatments to save his life from relapsing neuroblastoma.

His body is now fueled by his 11 year old brother's donated bone marrow cells, and he is kicking butt and taking names with this bone marrow transplant,

But now it gets real. Now we wait for two days to find out if the treatment he just went through has killed the cancer cells....

...and my stomach is in knots because if it's not gone...

...I can't even type it,

Let alone think it.

It simply has to be gone.

Braden has been fighting cancer for 6.5 years...

and he's 9 years old.

He has no idea what life is like when you are not in continual treatment. He has autism and doesn't even know he has cancer, so he just fights...

and lives life to the fullest every day with joy and love.

As he was still in a deep sleep from sedation, he had one single tear dripping from his eye and it broke my heart in a million pieces.

Braden never cries about his cancer, he hasn't cried ONCE during his bone marrow transplant...to the contrary...

he has been shooting basketball hoops, playing, and painting beautiful pictures.

But it does wear on him....and that tear showed it.

I often hear people tell me how they hate cancer because of what it has done to them or to someone they love.

And this tear completely ripped my heart out. Just another time cancer was hurting my baby.

But I will never say that I hate cancer.

The reason is simple.

Hate comes from an ugly, evil place.

Hate is the reason that a grandfather, his 14 year old grandson, and a woman were just shot and killed in my hometown.

A fourteen year old beautiful boy who had his entire life ahead of him. A grandfather who was lovingly taking him to try out to be a part of a singing group, a dream of his. A woman who was making her weekly visit to her mother at a retirement village.

Gunned down randomly by a crazy man yelling "Heil Hitler" as they placed him in the police car.

You see, they were killed at two different Jewish locations, likely because he believed they were Jewish.

THAT is hate...

THAT is evil...

And that is simply horrific...

and as much as I actively dislike what cancer has done to our son and our family, I simply REFUSE to allow this disease to make me hate.

I refuse allow cancer to conquer me.

I refuse to allow it to make me hate.

cANCER, evil and hatred will never receive my soul.

As much as I would have chosen another path for our son, it is the path he has had to walk. I would give my life to change that for him, but I cannot.

cANCER has blessed us in so many ways. We have been shown how much love, support, compassion and true selflessness is in the world. People have shown us all of that with open arms. As they did when the community showed up to welcome Zach home after he arrived from donating his bone marrow to Braden to try to save his life.

THAT is love.

THAT is goodness.

So in a very twisted turn of events, cANCER has brought beauty and grace to our lives by showing us exactly how much more good there is in the world than evil.

My heart breaks because of our son's one single tear dripping from his eye.

I allow myself to feel sadness and fear because I am human,

but I get back up and I fight every single day because I refuse to allow hate in my life in any way shape or form.

Hate is the worst four letter word in the world because it consumes souls and allows evil to reign and spread.

We conquer hatred through loving acts and words, and through faith.

God has Braden in His hands and I trust Him to care for him and that far surpasses hatred and evil.

"Lord, make me an instrument of thy peace. Where there is hatred, let me sow love."

--Francis of Assisi

Amen.

Heroes and HOPE...

On March 31, 2014, our ten year old son,  Zachary, arrived at the Children's Hospital of Philadelphia at about 5:30 am.

First, dad and Zach stopped by his little brother Braden's room in the bone marrow transplant unit. Braden and I were able to give them hugs, kisses, and tell Zach good luck.

Zach and daddy walked down the hallway toward the surgical center.

Zach was carrying more than his backpack filled with his blanket and i-pod touch.

He also carried with him HOPE!

Hope that his cells would carry the cure to a secondary leukemia that his little brother had been diagnosed with that was caused by the treatments to put him in a remission from his first two cancer battles with neuroblastoma.

His odds of five year survival after his neuroblastoma relapsed were less than 10%. He was in year 3 of that battle and his neuroblastoma remained in remission.

As horrific as those odds were, this new secondary leukemia was even worse. His teams in Philly and Kansas City had never seen a child beat this particular form of MDS after battling neuroblastoma.

Ever.

A bone marrow transplant was Braden's only HOPE for a cure, and an end to cancer forever. Braden's bone marrow would be killed off by high dose chemotherapy and then donor cells would be transfused into his body to try to replace his bone marrow with healthy cells that could take over and kill any remaining cells the chemo missed, and keep a vigilant watch in his body and destroy any future cancer invaders.

After an exhausting search for a bone marrow donor, there was only one match. And that match was a perfect match.

His ten year old brother, Zach.

We talked to Zach about his donation and we were very honest with him about what could happen. When a stranger donates cells, they do not meet their match until one year post transplant.

There is a very good reason.

The odds are very high that the transplant won't work and it's really tough for donors to know that their cells failed to save the person's life.

Zach is well aware of this.  He knows that his cells may not save Braden but that his cells are the only chance Braden has to live.

Without those cells, Braden would die.

And that is a lot to deal with as a ten year old brother.

Zach is very frightened of all things medical...especially needles. When he had his flu shot this year, it took several nurses and a long time. At one point he said, "Everybody just hold on for a minute! I need to breathe because I have a very big problem with large needles near my body"!

Zach faced his fears of needles and procedures. He faced his fears about "what if" and he donated his cells during a 2.5 hour procedure in which the oncologist harvested about 837 ml of bone marrow cells from Zach's back/hip.

It took about 50-75 cores of bone drilled from his body to do that. It is very painful after the procedure but Zach was tough.

After recover, Zach was able to come back to Braden's room and they were side by side while the cells were transfused into Braden's body.  A hospital clergy said a prayer and blessed the cells as they went in and after Zach said,

"that prayer proved that I was chosen for this by God mom!"

It takes a very special person to be chosen by God to try to save your brother's life. We don't know if it will work, but the most important thing is that Zach was willing to try.

Selfless...

loving...

HOPEFUL.

The night before the procedure, we named Zach's cells "Z-Force" because Zach is into all things military and his cells are like a Special Ops Battalion going into destroy the bad cells, take over, and keep watch for a lifetime and immediately destroy any insurgents. A pretty big job for any Special Ops unit...but Zach is special because his cells are super charged with LOVE and HOPE!

As the cells were transfused into Braden's body, someone noticed that the tubes actually made a heart shape.

An unplanned sign.

We expected Zach's cells to begin to engraft in Braden's body around 13-14 days after the transfusion. Today is day 7...

and they are already starting to engraft.

We still have a very long road ahead...they must engraft fully, remain engrafted, not cause extremely detrimental graft vs host disease, and keep the cancer away forever...

a long road indeed...

but it is possible...

and we are hopeful...

and I stand in awe of my two brave sons.

One the donor, one the recipient...

a perfect match.

HOPE!  For both of my heroes!

Courage is contagious....

For 6 years, I have watched our now 9 year old son, battle cancer.

First, neuroblastoma with 30% odds for 5 year survival, then a relapse with a less than 10% chance of five year survival (of which is 3 years and 2 months into and still in remission) and now secondary leukemia caused by the treatments he has had to save his life. Our teams in Philly and KC have never known a child who has survived this particular type of MDS after neuroblastoma. 

Not one.

We have been faced with more decisions about which path to walk down for treatment, or no treatment, more times than I can count. 

More life/death decision than I care to remember. 

Seriously, you have to choose whether to fight for your child's life or resign from attacking cancer and appreciate the time you have left.

Not an easy choice to make.

We have always followed Braden's lead. He has never, once waivered in his fight. 

Braden has autism so he can't tell us with his words, but he shows us. 

He wakes up happy and joyful every day, and he is silly even the cruddy days that he feels horrible because of his treatments. 

His bad days are still full of life, gratitude, and love.

He just wants to play and be with his family and friends. He loves everyone he meets, accepts them, appreciates them, and wants to play with them.

That's an attitude we should all adopt.

Braden doesn't know life isn't supposed to be filled with pokes, poison, cores of your bone marrow being drilled out repeatedly, medicines, and managing the side effects of treatment.

So he just appreciates what he has, even if it isn't what most of us would consider to be "normal" or good.

And he is HAPPY about it!

As we sit in the hospital for a bone marrow transplant and he is getting high dose chemotherapy to kill all of his bone marrow so he can accept his perfectly matched ten year old brother's bone marrow, he remains happy and joyful...and he wants to play...

...basketball.

We have a hoop in the room and he seriously plays for hours a day.

He flirts with the nurses and has won them over. Just this morning, he was winking and smiling at his nurse and told her, "Hey you...I'm flirting!" :)

Yesterday morning, the first words out of his mouth when the nurse walked in were, "It sure is a lovely day today!"

Seriously, who does that while getting high dose chemo and feeling yucky?

I would be in the fetal position in a corner sucking my thumb crying.

Not Braden.

But what I didn't realize was how much courage is contagious.

Braden is like King Arthur and the land...as Braden goes, so go those around him...

especially mom.

I understand how horrible his odds are, 

I understand how impacted his body might be, if he survives,

I understand how it could change this quality of his life because we made the decision to fight,

I understand fear...

and worry.

I understand the bad stuff that he is blessed to not understand. 

But because Braden is brave, so am I.

His strength fuels my strength.

His will fuels my will.

His fight fuels my fight.

His HOPE fuels my HOPE!

And on this, the last day of his conditioning chemo, we will play basketball while he stops in between shots to double over in pain...

and then continues.

And I won't cry.

I will cheer, and clap for him. 

I will smile,

and have the courage to fight too.

God has this and our job is to remain courageous and trust.

cancer is not bigger than God,

and it is NOT bigger than Braden Hofen,

so I'm going to follow his lead and remain courageous...

thanks for sharing that inspirational gift my sweet Prince.

Mommy loves you!

Faith...

Most of us have had to make choices that are very difficult.

Some of us have had to make choices that were impossible.

We have one of those impossible choices to make right now.

Braden's secondary cancer (mds leukemia) that was caused by the harsh treatments he endured to beat his first cancer (neuroblastoma) is going to kill him if we don't do a bone marrow transplant...and that could kill him. And if the transplant works and rids his body of the mds, his immune system that may be responsible for keeping any dormant neuroblastoma cells quiet may then allow the neuroblastoma to come back. And that would kill him. 

It's a choice in which, like so many parents of children with cancer, we have to make an impossible decision about life and death.  

Does he die after he's had the most amount of good quality time without further risky treatments, or do we risk things and hope to not kill him, shorten his life, or take away the quality of the time he has left with the risky treatments by fighting for a cure...

This beautiful,vibrant, happy boy.

We have been fighting this mds since he was diagnosed on July 8 and we were told that he had only several weeks to a few months to live. We had to make the choice to either do nothing and let him die then or try a chemotherapy that we inject into him at home for seven days, two to three shots a day every three weeks.

Every time we have been told Braden was going to die, we have take the option that gives him a chance to live. 

And we have faith that God will be there for us no matter what the result of the treatment.

Now we have to do something different for his mds. We have known this path isn't curative and would only buy us time and now we see signs that we need to proceed with transplant if Braden is going survive.

We have chosen the only path for treating his mds that allows him even a small chance of beating it all and surviving.  Braden will have a bone marrow transplant and we will hope that he survives it, it kills all the leukemia, his donor cells engraft, and the neuroblastoma stays quiet.

Imagine being at the top of a jagged cliff and knowing you are going to die very soon if you don't jump and take a chance at surviving.  You know that whatever way you jump, there are rocks surrounding you that are not going to give a safe landing.  There are just a few green, softer spots (and even those softer spots aren't particularly appealing). 

But WE are not going to jump.  

We have to throw our child off that cliff...

and we can't make the jump with him. 

We have to hope our aim somehow lands him in the exact right place at the exact right time so he will recover and survive. 

We know no matter what, he will not land unscathed, it's a matter of trying to choose the spot that will do the least amount of harm and give the most hope for recovery and survival.

We know transplant will cause harm and will have side effects that will last the rest of his life. We don't know how devastating and debilitating those side effects are going to be though. 

That is a lot to wrestle with in your heart and mind.

Imagine, for a minute, throwing your child off that cliff hoping to do the least amount of harm while giving him a chance.

Imagine being forced to make a choice like that with your child.

It sucks as much as you are thinking, especially when it's not a hypothetical question.

We can only hope, trust...

and have I have unending FAITH that God is there and will give us the right answer to our prayers...

even if it's not the answer we want.

That is a very hard thing to do.

God gives me peace and my hope, my faith and my trust are bigger than that jagged cliff. 

My God is greater than that cliff and His love surpasses all the danger and fear.

We are fighting like crazy to keep Braden here with us. Make no mistake...we are NOT ready to let him go!

I've held on to my faith since his terminal prognosis in July. And this past week, we learned some very unexpected news that made that teeny tiny glimmer of hope we have held onto just a little brighter.

The doctors told us that Braden is in a very unique situation and he has a few things going for him.  

And the words "a few things going for him" were unexpected and glorious to hear . 

First, his neuroblastoma has been in a second remission for three years. That is nearly unheard of with relapsing neuroblastoma.

Secondly, his mds is currently only affecting about 2% of his cells and because that is fewer cells to have to kill and it has responded to therapy. He began at about 20% of his cells so the chemo has been working. It is encouraging this the cancer responded to the chemo and it's better that he has less disease to fight with transplant.

Third, after 6 years of continuous cancer treatment, Braden's organ function is good. That's pretty amazing. He has a few treatment induced health issues but his organs are functioning in acceptable ways.

Then there's a huge positive. Braden has one and only one bone marrow match in the registry. And his bone marrow match is his ten year old brother, Zach.

That gives him a "related bone marrow donor". And it's a huge advantage.

There are multiple benefits to having a bone marrow donor that is a sibling, simply put it can make the engraftment process easier and cause less complications and side effects.

It only happens 25% of the time that a sibling is the match for a patient.

And on Friday, we learned that Zach is a FULL MATCH for Braden...and that is really good news.

Zach is excited to try to save his brother's life.

And we are blessed to have a ten year old who is brave enough to try. It may not work, his cells may not engraft and even if they do the rate for relapse of mds post transplant is extremely high, but knowing all of that, Zach is willing to try.

Zach is a pretty awesome kid!

So while we are standing on that cliff with really crappy choices to make, we have some new hope...

....all thanks to faith that God will guide Braden to a softer green spot on that jagged cliff.

Please hope with us and believe all things are possible!

“Never be afraid to trust an unknown future to a known God.” 

--Corrie ten Boom